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先天性心脏病对兄弟姐妹的影响:综述。

Impact of congenital heart disease on siblings: A review.

机构信息

The Cochrane Collaboration, St Albans House, Haymarket, St. James's, London.

Department of Advanced and Integrated Practice, School of Health and Social Care, London South Bank University, Borough Road, London, UK.

出版信息

J Child Health Care. 2020 Jun;24(2):297-316. doi: 10.1177/1367493520914738. Epub 2020 Mar 27.

DOI:10.1177/1367493520914738
PMID:32216565
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC7488830/
Abstract

Congenital heart disease (CHD) is the most common birth defect. Little is known of the impact of having a sibling with CHD. Available literature documents negative impact of having a sibling with other chronic conditions. This literature review considers empirical evidence investigating the impact of having a sibling with CHD. Twelve databases were searched, and 202 articles retrieved. Eleven articles met the inclusion criteria and were subject to data extraction, quality appraisal, and narrative synthesis. Three themes emerged: changes in normal life, impact on siblings, and factors affecting the extent of impact on siblings. Only one intervention study was identified, 5 of 10 studies were conducted over 20 years ago, and only 4 studies included children as participants. Evidence suggests siblings of children with CHD experience adverse life changes which lead to negative impacts in several domains. Evidence is inconclusive regarding mitigating factors of these impacts. Further research is needed to understand the experiences of being a sibling of a child with CHD.

摘要

先天性心脏病(CHD)是最常见的出生缺陷。关于有一个患有 CHD 的兄弟姐妹的影响知之甚少。现有文献记录了患有其他慢性疾病的兄弟姐妹的负面影响。本文献综述考虑了调查有一个患有 CHD 的兄弟姐妹的影响的实证证据。搜索了 12 个数据库,共检索到 202 篇文章。11 篇文章符合纳入标准,并进行了数据提取、质量评估和叙述性综合分析。出现了三个主题:正常生活的变化、对兄弟姐妹的影响以及影响兄弟姐妹影响程度的因素。仅确定了一项干预研究,其中 10 项研究中有 5 项是在 20 年前进行的,只有 4 项研究将儿童作为参与者纳入其中。有证据表明,患有 CHD 儿童的兄弟姐妹经历了不利的生活变化,导致在几个领域产生负面影响。关于减轻这些影响的因素的证据尚无定论。需要进一步的研究来了解作为患有 CHD 的儿童的兄弟姐妹的经历。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9879/7488830/f348508293fa/10.1177_1367493520914738-fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9879/7488830/f348508293fa/10.1177_1367493520914738-fig1.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9879/7488830/f348508293fa/10.1177_1367493520914738-fig1.jpg

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CHIP-Family intervention to improve the psychosocial well-being of young children with congenital heart disease and their families: results of a randomised controlled trial.家庭干预芯片改善先天性心脏病幼儿及其家庭的心理社会福祉:一项随机对照试验的结果
Cardiol Young. 2019 Sep;29(9):1172-1182. doi: 10.1017/S1047951119001732. Epub 2019 Aug 5.
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Perception scores of siblings and parents of children with hypoplastic left heart syndrome.左心发育不全综合征患儿的兄弟姐妹及父母的认知得分
Congenit Heart Dis. 2018 Jul;13(4):528-532. doi: 10.1111/chd.12619. Epub 2018 Jul 17.
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The CHIP-Family study to improve the psychosocial wellbeing of young children with congenital heart disease and their families: design of a randomized controlled trial.
菲律宾一家三级医院中患有先天性心脏病儿童的菲律宾母亲的应对策略
Acta Med Philipp. 2025 Jan 31;59(2):41-49. doi: 10.47895/amp.vi0.9043. eCollection 2025.
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Siblings of Persons with Disabilities: A Systematic Integrative Review of the Empirical Literature.残疾人的兄弟姐妹:实证文献的系统综合综述
Clin Child Fam Psychol Rev. 2025 Mar;28(1):209-253. doi: 10.1007/s10567-024-00502-6. Epub 2024 Oct 16.
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Examining emotional and behavioural trajectories in siblings of children with life-limiting conditions.检查患有危及生命疾病儿童的兄弟姐妹的情绪和行为轨迹。
BMC Palliat Care. 2024 Aug 12;23(1):205. doi: 10.1186/s12904-024-01535-y.
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Prioritizing family-centered developmental care: insights from parents of children with critical congenital heart disease: a qualitative study.优先考虑以家庭为中心的发育护理:来自患有先天性心脏病儿童的父母的见解:一项定性研究。
Eur J Pediatr. 2024 Sep;183(9):3863-3876. doi: 10.1007/s00431-024-05600-9. Epub 2024 Jun 18.
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Cost-utility analysis of prenatal diagnosis of congenital cardiac diseases using deep learning.基于深度学习的先天性心脏病产前诊断的成本效用分析
Cost Eff Resour Alloc. 2024 May 22;22(1):44. doi: 10.1186/s12962-024-00550-3.
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Pediatr Cardiol. 2025 Apr;46(4):757-768. doi: 10.1007/s00246-024-03518-5. Epub 2024 May 16.
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